Help Please - 2 Year Old Changing Tics

[cobygurl]

Hi,

Back at the end of February my 2 year old started a tongue rolling tic.  It went away for a week after our ND gave him an antiviral homeopathic/tincture and then seemed to morph into a shoulder shrugging tic.  

That tic lasted about a week and disappeared (in which time our GP did a swab for strep that came back negative and discovered he had a heart murmur that she believes is an atrial septal defect). We are now waiting on a paediatric cardiologist to make a diagnosis.  

On top of this, he has now started some sort of hard blinking tic.  It’s not constant but when he does it there are several in a row and it looks like he’s trying to clear his eyes or focus.  It’s worse when things are colourful or there is a lot of pattern.  Worse too when he sees screens (we try to limit his exposure.)

Honestly, I am so overwhelmed and feeling devastated by all this.  What do you recommend I do if the swab came back negative and the GP wants to concentrate on his heart murmur?  

By the way, any kids with murmurs?  Did any start when you first discovered PANDAS/PANS symptoms?  

Thanks in advance for any advice.

[bobh]

If it were my child, I would tend to let the pediatrician concentrate on the heart murmer, and I would tend to go elsewhere for a PANS diagnosis and treatment.  I am sure that is hard advice to follow, because it seems like it means more work for you.  But it is truly what I would do, based on my own experience.

If the pediatrician is not already disposed towards checking for PANS/PANDAS, it is typically gargantuan job (I would say in most cases, fruitless) bringing them to actively recognize and treat your child for tics.  Finding someone else to help with that I think is actually less frustrating, i.e. less work and especially less time for the child suffering.

The first thing your pediatrician would have to learn, is that good strep swabs of the throat are hard to do properly.  Imagine telling her that.  Then, she would have to be convinced that the swab she did do has a fairly high false positive rate, so could she please do another just to be sure about that.  You see the problem here.  Then, you would have to convince her to accept the idea of also doing a peri-anal swab (because sometimes it is just there, and not in the throat).  I know a strep expert mom - she buys her own swab kits, and she also tests boogers.

Then, you want the ASO reading from a blood draw.  If all these swabs and the ASO don't turn up any hint of strep exposure, then we go looking for other infectious triggers (i.e. a PANS diagnosis), which can be any kind of virus, mold, allergens (probably not for a February onset) or even (potentially) other things like high heavy metal levels.

Sorry for this hard-nosed, straight up talk.  But there are tests, and ultimately solutions (yes, the tics can get better with the right treatment) that a typical mainstream doctor or pediatrician won't pursue.

It is so heart-breaking, to read about a 2-year old with tics.  But you have this going for you:  you are looking broadly now, early on, and not just riding various doctors directions for months and even years (like many of us have) before looking beyond.  Proper treatment early seems to help.